Two-weeks-old, or 32 and 4

Yesterday our daughter turned two weeks old. But in the NICU, babies are referred to by their gestational age because it’s more indicative of their level of development. So yesterday our daughter was known at the NICU as 32 weeks and 4 days. She has had a few setbacks, but has made mostly positive progress so far, and everyone keeps telling us that her long-term outlook is good.

It doesn’t really feel like it’s been two weeks because we only see our daughter a few hours a day. Taking care of our six-year-old prevents us from being there longer, but perhaps that’s a good thing. The NICU is not a happy place. It is divided into multiple bays, each with up to 8 babies, which are dimly lit and filled with the constant sound of beeping machinery. As I’ve mentioned before, it feels like it’s part nursery, part laboratory.

Above: Bubble Mommy holds Bubble Baby at 5-days-old

Our baby is kept in what’s called an isolette, which looks like a huge plastic box on a pedestal that’s connected to several computer screens. The isolette has two doors on each side for hands to gain access to the baby, and the top can also be raised up for access. She is hooked up to several different tubes, wires and monitors. There are separate ones for her heart rate, respiration, the oxygen level in her blood, temperature, and blood pressure. There is also an IV, which is constantly being relocated on her body. One day they had her IV on her head, which was somewhat hard to look at.

At birth our daughter could not breathe on her own, so she was intubated – a tube was placed down her throat to assist with breathing. But she quickly graduated to a CPAP (continuous positive airway pressure) device, and then to a nasal cannula. Eight days after birth, the cannula was removed. As of today, she is still breathing room air. She gets periodic doses of caffeine through an IV, which, as the nurses have explained, helps her body “remember to breathe.”

She also has a feeding tube that was first inserted into her mouth, but now is in her nose, which is used to transport milk directly to her stomach. She can suck, breathe and swallow, but cannot breast-feed or bottle-feed yet because she is not coordinated to do all those things together in the right way. We’ve been told that she may be ready to start that in a couple of weeks, but that it may take a long time for her to master. And since her digestive system is not mature, occasionally milk will just sit in her stomach and will have to be extracted later. They refer to that as “residuals,” and with each feeding we hope to hear that she has none.

Above: Bubble Daddy holds Bubble Baby at one-week-old

A few days ago she had some blood in her stool, which sounds frightening, but is just another sign that her digestive system is not mature. So they withheld her feedings for a couple of days.She was still getting the nutrients she needed via an IV, but her stomach felt hungry, and she was a bit fussy for those days.

She has also had jaundice, which is fairly normal even for full-term newborns. It is treated with phototherapy, which consists of special lights that shine from above and below her. During phototherapy she is blindfolded and we are not allowed to hold her very long. We are told that it can come and go several times for a preemie, and so far she’s had two different spells.

Last week she had a brain scan, which fortunately came back clean. It’s not a guarantee that she doesn’t have a problem, but it’s the best possible result we could hope for. Also, at one point they thought she might have an infection, but tests came back negative. However, we are told that infections are normal for preemies, so there is a good likelihood that she will get one at some point.

Above: Bubble Baby at two-weeks-old

It’s been tough on our six-year-old because children are not allowed to visit the NICU at our hospital. We have shown her a few selected photos and video clips, but she so badly wants to meet her sister in person.

If all goes well, our daughter might be home by late October or early November. Time is going by faster than when my wife was on bed rest, but it’s still going by slowly.